Waiting for the End With Faith in God, but Not in Miracles
The silence in the room seems immense as Eric Johnson ponders an answer to my question. Only the soft whisper of a fan intrudes, placing the stillness in its proper context. Small sounds, by contrast, define larger silences.
Suddenly Johnson’s hands move and he begins to “speak.” It isn’t his own voice, only his words. As he types them out on the keyboard, a voice from his computer repeats them in a stilted, metallic tone.
“I want to fight on,” the voice says, the quality of its sound a sharp, serrated bite into the hushed ambience of the room.
I look at Johnson, a tall, rangy man of 62. His craggy face is expressionless. The fan whispers. Sounds rise up from the street level below to the second-story room of his Sylmar home. A child’s voice, a car engine.
“Yes,” I finally say for lack of anything more profound, “I’m sure you do.”
Johnson is dying. One can say, philosophically, that we’re all dying, but in his case, the parameters are already set, the limits imposed. He suffers from amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease or ALS.
There is only one small chance that he can stay alive. It’s a medical quest that has become a political and moral issue called stem cell research.
It dangles before him like a golden promise to return to an existence that is slowly fading.
Johnson learned 16 months ago that he had ALS. It’s a nervous-system disorder that causes muscle degeneration and slow paralysis. The body ceases to function as the mind remains alert. He has lost his ability to speak, and his muscles are already dissolving. At best, he has maybe another four years. There is no known cure.
For those who cling to the edges of life, stem cell therapy is their newest hope. Last week, President Bush agreed to allow federal funding for limited research. Simultaneously, private research is continuing.
Scientists believe that stem cells taken from very young embryos offer great potential for curing a vast spectrum of diseases.
One theory holds that placing cells in the area of the spine to replace the lost motor neurons of ALS victims could extend their lives or even cure them.
While debate rages over the morality of extracting the cells from live embryos, Johnson has no recourse but to wait, to remain as upbeat as possible and to believe there is a God who will embrace him in the final moments of life.
It hasn’t always been a good life. Although a strapping 6-foot-2, an athlete in high school and an advocate of physical fitness, Johnson was first hit with throat cancer, now in remission, and then with ALS.
In between, his digital media business failed and his 23-year marriage fell apart. He had to give up a lavish home in Crescent Heights for a more modest place in a low-rent neighborhood.
Worse, though he has a brother who visits off and on, Johnson feels alone. Politicians whose elections he worked for and agencies that he supported when he was healthy no longer respond to his calls or letters.
Ignoring his brother who comes into the room, he says through that slow, robotic voice, “I only have Sammy,” gesturing toward a large German shepherd sprawled nearby. “I have found that about 95% of my friends, family and church members don’t want to deal with a dying man.”
It was an awkward two hours we spent together. I’m not good at dealing with someone whose voice enters the room like a message from outer space. Johnson says he has found spiritual peace through meditation and accepts what is happening.
The long days of dying offer a time for him to assess his life. In a computerized journal, he writes that meditation “allows my spirit to grow from nothing to the guiding light of my life.”
But even as he turns inward from a world retreating before him, Johnson remains the pragmatic nuclear physicist he once was, the degree-loaded student (B.A., M.A., M.S. and M.B.A.) from UCLA: “I believe in God and a higher power,” he says in the eerie metallic voice. “I just don’t believe in miracles.”
Even the wonders locked in the secrets of stem cells seem distant to him. He avoids discussing them at any length, as though the possibilities are too overwhelming. Suppose they work?
Suppose they don’t.
Most of his days are spent writing and trying for the kind of federal assistance that would allow him to have home care. At the moment, he lives on a private disability pension and state aid. He lives alone.
Johnson has asked for help from politicians and lawyers to take him through the federal maze, but all have either turned him down or remained mute.
But the effort at least is therapeutic. Anger and frustration drive his will, giving him a goal. I’m not sure what his days would be like without the animating rage, his belief in an all-caring God and a faint hope that stem cell research will result in a cure before his body and, at last, his mind vanish completely into whatever eternity exists.
All he can do is wait out the final days, hours and seconds of his life, and wonder with a sorrow too deep to measure why so many have abandoned him.
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Al Martinez’s column appears Mondays and Thursdays. He can be reached online at al.martinez@latimes.com.
